I was just sitting here, and I noticed the date on the calendar — 3/29/2023. It was two years (and 2 days) ago that I underwent a procedure that confirmed I had cancer. It was, technically, the beginning of my cancer journey.
I had been sure of it several weeks earlier, in early February, when I unexpectedly started bleeding vaginally, almost 12 years after menopause. The first words out of my mouth were “Oh my God, I have cancer!” I don’t know what brought those words out of my mouth, but I knew, without a doubt, I had cancer.
I only bled for one day. Imagine if I had just ignored it. Imagine if I had just “waited to see.” Imagine if I hadn’t followed up, even though my insurance company made it almost impossible for me to follow up.
I knew this was serious, and I was tenacious in following up. I think a person less used to having to advocate for her medical rights would have given up simply because of all the ridiculous hoops the insurance company made me jump through.
Because of my altered anatomy (my pelvis has been reconstructed, plated, bone grafted, and pinned over the years) the only way to do a pelvic exam (at this time of my life) to confirm the cancer was to do it surgically, under full anesthesia, in an OR with a special platform for people like me – with musculoskeletal deviations.
I wanted to get an appointment with a well-known oncologist gynecologist, but the insurance company wouldn’t allow it. They said I had to go to my PCP and have a pelvic exam done there. I explained to them it wasn’t medically or physically possible, but they would not relent. So I waited a few weeks to get in to see my PCP, all the while knowing cancer was pulsing through my body.
When I went to my PCP, I explained the issue of my pelvic reconstructions and the difficulty of doing a pelvic exam. She looked at me (and I do mean “looked”) and said, ”I can’t possibly do a pelvic exam on you. I don’t have the right equipment, and I don’t have experience with your disability”. I said, “I know, but the insurance insisted I come here.”
She documented that I needed a gynecologist with experience with people with musculoskeletal deviations. Then, of course, the insurance insisted I go to a standard gynecologist. They couldn’t get me in for 6 weeks. I personally called all over town until I found a gynecologist who knew how to do a pelvic exam on me, had hospital privileges at the only local hospital that had the special platform, and he worked me in quickly, and my PCP helped me appeal the insurance company’s decision.
This male gynecologist had just recently gone into practice. He knew a lot about gynecology. He knew very little about cancer. When he did the exam, he knew what he was seeing was very abnormal, that it was some kind of cancer, and that it was invasive. He called me into his office when the pathology report came back. He told me I had cancer, and he gave me a referral to the oncologist gynecologist I had wanted to see in the first place.
I went to see her. Of course, she couldn’t do a pelvic exam in her office either, so she relied on the other gynecologist’s report. When she read it, she said, “This doesn’t seem too bad. It looks like you just have endometrial thickening.” I stopped her and said, “I don’t know what that report says, but I saw the look on that doctor’s face when he told me I had cancer.”
My oncologist gynecologist was a very smart woman, and she said “The best way for me to figure out what’s going in is to just call him directly.” And she did, right there in the exam room. He explained to her, in detail, what he had seen (which wasn’t clear in his report at all.) When she hung up, she said, okay we need to get a PET scan on you, and then we’ll plan the next step. I was relieved.
Guess what? The insurance company wouldn’t approve the PET scan. They said I had to have an MRI. I tried explaining to them that an MRI would be of no use, since I have 9 ½ pounds of surgical metal in my pelvis. They still insisted. (Obviously, the metal streaks, blurs, and physically blocking a huge section of my reproductive organs would make it unusable.)
I asked my oncologist gynecologist to appeal the insurance’s decision, but she explained to me that they could tie up the appeal for up to 4 weeks, and that was not what we wanted to happen. She said to go ahead and do the MRI, and when it came back as unusable, she could get the PET scan approved very quickly. She said it would be quicker this way, so I had the MRI and exposed myself to unnecessary contrast, which is incredibly hard on my kidneys (I also have CKD.)
Of course, all the metal in my pelvis and well as bone in strange places, made the MRI unusable and caused an issue we didn’t realize yet. The MRI said my tumor was 1.4 cm. The PET scan said it was 2.4 cm. Based on this information, my oncologist gynecologist recommended a radical hysterectomy and removal of my pelvic lymph nodes for testing.
I agreed. This sounded reasonable. A small 2.4 cm tumor is very operable. If only we had known how wrong we were!
My bladder was prolapsed, so the surgeon (my oncologist gynecologist) removed it from its attachments, and moved it over, out of the way, and pinned it into place. When she removed my uterus, she was shocked to see that tumor was tightly packed and over 4 cms, which technically means it was “inoperable.” She had great difficulty even finding my pelvic lymph nodes (they were located so much deeper in the pelvis was typical, and 5 of the 11 she removed were not even functional. (They remove the lymph nodes to send them to pathology to see if they have cancer spreading through your lymphatic system.)
I was in the hospital for 10 days, and my surgeon came to visit me every day. Then I was sent to a nursing home for 4 weeks (I signed myself out against medical advice after two weeks, because the care was so poor.) It was during my 2nd week in the nursing home I was “called in” to my surgeon’s office. The nursing home arranged a handivan to transport me. This is when my oncologist gynecologist told me that the tumor was more than twice the size that the imaging had indicated and that I was going to need very aggressive chemo and radiation, followed by brachytherapy.
I did ask her why she didn’t tell me any of this when she was visiting me in the hospital. She simply said, “I wasn’t sure you could take it then. You were so weak, and you were completely alone.” I think she was probably right. She said I needed about another 4 weeks to heal from the radical hysterectomy (it was an open incision, so recovery was fairly long)
So, then I started the second part of my journey – 45 sessions of radiation, 6 weeks of chemo, and two weeks of brachytherapy (which is internal radiation and was incredibly difficult because of my anatomy.)
All of this started — my cancer journey — two years and two days ago. I never thought that two years later, I’d still be recovering from the damage done by radiation and chemo.
Who knew two years and two days ago that I’d lose eleven lymph nodes, my ovaries, my fallopian tubes, my uterus, 2/3s of my vagina, 3 feet of my small intestine, several bowel loops, my cecum, my appendix, part of my ascending colon, and finally, my gallbladder? Who knew my sigmoid colon would be damaged to the point it could not be repaired, that my rectum would be damaged, and that I’d suffer an anal fissure and internal hemorrhoids?. Or that I’d contract a serious recurrent colon infection, constant B12, and vitamin D deficiencies, frequent malnutrition due to my remaining intestine’s inability to absorb vitamins and nutrients, and bile acid malabsorption?
Lastly, who knew I would end up with dietary limitations which meant eating only low fiber, low fat, low residue, bland foods to almost the exclusion of almost all vegetables, fruit, all whole grains, seeds, nuts, beans, and dairy? But here I am – alive, and well, and waking up to sunshine almost every day! Who knew?
